9. The Pieces They Left Behind
9. The Pieces They Left Behind
The truth about my "special interests"
Welcome to CHAPTER NINE of #TechnicallyAutistic: Lessons from the Periphery, where I talk about what the adults didn’t understand when I began questioning my diagnosis at fifteen.
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The diagnostician said I had autism. As for ADHD, he’ll send a questionnaire.
The verdict: resolved.
I outgrew it, apparently. Dyspraxia wasn’t even mentioned.
“Oh, you definitely have ADHD tendencies. No question about that,” said my mom.
Daydreaming. Forgetfulness. Misplacing my belongings. These were the prominent traits that prompted her to get me evaluated in the first place.
“But I was told that you could only be diagnosed with ADHD or autism, not both.”
“Well it says on Wikipedia that it changed in 2013,” I said.
“Hmm, in that case, I think that’s also strange.”
She looked at me with sympathy.
I knew that my brain fog couldn’t have been easy on my family either. At the dinner table, my sister would spend twenty minutes talking to my mom about her plans with her friends, and the day after, I’d ask my mom for a ride at the exact same time my sister also needed one. Zero recollection. Any piece of information that was mentioned in passing or didn’t concern me directly was guaranteed to be immediately discarded by my brain.
One time, I tried to get vanilla ice cream at a bakery and didn’t notice the employee had scooped out the strawberry one instead, right before my eyes, until they handed me the cone. As soon as I got into the car, I cried, horrified by how disconnected I was from my surroundings.
But Asaka, why do you care about labels so much?
My parents insisted that these were just technicalities. They told me to stop splitting hairs and touch grass, pretty much. Remember, they said: that most kids your age don’t want to sit through a lecture about the classification of diagnosis.
Me neither. The truth was I was sick of shit as much as everyone else. I was sick of putting myself under a microscope, sick of defining myself by my disability, and sick of researching everything, all for the illusion that any of these conversations were happening on my terms.
I went through the hassle of researching, printing articles, and nagging my parents — and my school — to get me re-evaluated, because I thought that these new diagnoses would give me a more concise way to communicate my disability to the people around me. Talk about a return on investment.
Remember, they said: that most kids your age don’t want to sit through a lecture about the classification of diagnosis.
While my parents hoped that the doctor's verdict would be the last word and put my questioning to an end, it had the opposite effect. If you can call THAT autism, then you can surely call THESE ADHD and dyspraxia, I wanted to say. And if you’re saying that none of this reaches the threshold for ADHD and dyspraxia, then none of this reaches the threshold for autism. Not even close. I suspected I had dyscalculia as well, but I decided to not ask the doctor because I didn’t want to come off as obsessive.
School kept getting hard. Every time I couldn’t do something that my classmates could easily, it was a taunting reminder that most people had no idea what the hell going on inside my head.
“I can’t process it,” I’d tell my teachers, holding up a blank worksheet.
“What do you mean you can’t ‘process’ it?” my chemistry teacher asked me one day. She was just as confused as I was.
What do you mean? I wanted to ask. Everything she said about ionic bonds, covalent bonds, and coefficients sounded unrelated. It was like saying, I don’t know, that birds can fly because all mammals have hair, I don’t know. Sometimes, for a fleeting moment, I’d think I solved the riddle, and my brain would start pumping out hypothetical questions: Because birds have feathers instead of hair? But how about bats? Also, isn’t a dolphin a hairless mammal?—hold on, what was I about to ask? Somehow, each answer confused me more than the last.
I nodded and smiled as she walked through the problems, step-by-step. But every time it was my turn to do it on my own, it was like I fell off a cliff. She told Kristen: “She seems preoccupied by anxiety and easily shuts down.”
While all this was happening, another, unexpected diagnosis struck: Vascular Ehlers-Danlos Syndrome, or vEDS.
For years, I’d been bruising easily. Vitamin K deficiency? Anemia? Negative. Leukemia? Negative, thank goodness. Then I found myself in a geneticist’s office with a box of tissues placed conspicuously in my reach. I had a serious genetic connective tissue disorder, a collagen deficiency that made me high-risk in all aspects: strokes, bleeding, et cetra. The median lifespan of someone with vEDS is 50 years.
On the way out, my dad asked me if I was going to tell anyone. I said two names.
“Good,” he said. “You want to be smart about who you tell.”
But soon enough, I wanted to tell more than the two names.
vEDS was the reason that I stuck out like a sore thumb in gym class — and wound up with an actual sore thumb on multiple occasions. Every time I managed to catch the volleyball, I got a huge bruise that extended to the lower half of my hand. It hurt so bad that one time, I nearly passed out. One of the coaches gave me an Oreo and allowed me to leave early. After I was diagnosed with vEDS, she pointed me to the back of the gym, where three other kids with intellectual disabilities played catch with the help of an aide.
The characteristics of vEDS also explained why I felt physically different, in general. My shoddy joints made me walk with a hunched back and clench my jaw constantly. My blotchy skin made me seem like I’d been held back by more than two grades. One time in eighth grade, I wondered for a week if I had mosaic Down syndrome (a rare form of Down syndrome where only some of the cells have an extra chromosome) instead of autism because of my sunken eyes and an undefined jawline.
I couldn't help but look at everything that made me stand out, and ask: how much of it could I pin onto the physical stuff? Anything to distract people from the mental stuff. To distract myself.
My dad shook his head.
“You need to be careful about who to trust.”
He said that there were a lot of sensationalized information about Ehlers-Danlos Syndrome. For example, 1999, a man with a different form of Ehlers-Danlos Syndrome won a Guinness World Record for stretchiest skin1. He said that kids can be cruel and that he didn’t want me to be treated like a circus freak. But I already was.
“I don’t understand. When I was diagnosed with autism, you encouraged me to educate people.”
“Well, that’s different. Your condition is unique. It’s rare and it’s complex,” he responded.
He said that kids can be cruel and that he didn’t want me to be treated like a circus freak. But I already was.
I saw red. After all that he’s seen me go through, how could he imply that my autism — or whatever the hell I had — wasn’t unique or rare or complex?
But he looked at me with disapproval.
“Remember how you were dying to tell everyone you had ADHD?”
I was incoherent with rage.
“You see a pattern there?”
I slammed the door.
The official symbol for Ehlers-Danlos Syndrome is a zebra. As per the Ehlers-Danlos Society:
Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”
I find that funny because all the mental stuff made me feel more like a zebra than vEDS ever did.
The hoofbeat, the signs: My abrupt interruptions.
The horse, the expected explanation: I don’t understand when it’s my turn to speak.
The zebra, the unexpected explanation: I react too fast or too slow, and it’s hard to control.
The hoofbeat, the signs: My brief replies.
The horse, the expected explanation: I’m straightforward — a nod means I understand, “That’s nice” means “That’s nice,” “Good for you” means “good for you.”
The zebra, the unexpected explanation: I think vaguely, and I take longer to find reference points.
The hoofbeat, the signs: My monotone voice.
The horse, the expected explanation: I pay less attention to tone.
The zebra, the unexpected explanation: My speech organs wouldn’t let me.
I wasn’t just another emo kid collecting diagnoses like Pokemon cards; I was using my critical thinking like he’d told me to.
“Do you think you were misdiagnosed?” Judy asked me at some point, emphasizing the mis- in the misdiagnosed.
I pondered her question.
That old man became the third doctor to diagnose me with autism — not even counting the tentative diagnosis when I was seven. What are the odds of not just one, but three, doctors being wrong?
Apparently, it’s smaller than the odds of being a correctly diagnosed person reading hundreds of web pages, blog posts, and social media content, and still not being able to relate.
Well, shit. I was a unicorn, wasn’t I? Defying all laws of developmental psychology and doubted by humans. How majestic.
“You have a tendency to focus strongly on things, and that’s not a bad thing,” my dad sighed, sitting in my bed.
He tried to search his words, careful not to offend me. “Remember when you were into birds? You were always researching birds, reading encyclopedias, and classifying them. Mom and I took you to the Cornell trip to encourage that. But sometimes I worry that you’re going to focus on the wrong things.”
We both knew what he was talking about: special interests.
There’s nothing wrong with having a special interest—it can be a wonderful thing. Many people believe that Edison and Einstein may have been autistic because of their unwavering dedication to their fields of study. And have you seen the pure joy in a person’s face when they get to talk about their special interests? If you haven’t, I hope you get to witness that.
But diagnosis-ology wasn’t something that made my brain happy; it was something society had imposed upon me. Reviewing my diagnoses didn’t intrigue me, nor did it fulfill some unique, above-average need for order and certainty that any other teenage girl didn’t have.
My autism diagnosis was like a fixer my school hired for me when I was little. It mediated my interaction with the world, complete with an unwritten contract: We highly advise you to discuss your disability using the template we provide you. Failures to do so may result in third parties completing it for you. It's crucial to understand that we are obligated to maintain public records of each submission.
In attributing my anxious need to categorize my disability to my autism, he’d proved my point: this was something people used to interpret me, every day. A piece of paper, my ass. It was a whole damn framework, and when its foundations shook, I was trapped, while everyone else precariously balanced the pieces and walked away before they fell. I understand why it was given to me. I needed it to survive. Because bureaucracy.
But how could the world call me different for picking up the pieces they left behind? The dilemma of defining my disability was never about self-soothing; it was about self-determination.
Thank you for reading CHAPTER NINE of #TechnicallyAutistic: Lessons from the Periphery. Just a friendly reminder that this blog series is a work of MEMOIR. All pertinent disclaimers apply, such as:
- My narratives reflect the cultural context of the present year (2024? No way!) and my experience of growing up in the 2010s. If the world doesn’t change and I don’t change, then I’d be damned—we’d all be. Stay curious.
- I’ve made minimal changes to some names* and identifying details for the sake of privacy. I’d rather you not stay curious about that.
- I also used fictional names* for medications because different things work for different folks and I don’t want to interfere with anyone else’s path to wellness. (Do I have to tell you that I’m not a doctor?)
- But yes, this series contains depictions of mental illness that some readers may find triggering. Please take care of yourselves.
Now that I got that out of the way, a special shout-out to the best accountability buddies in the world: Dr. Harriet Hustis, for allowing me to start this project in a life-changing summer program, Nora Neus/The Longform Lab for supporting me through completion, and the journalism faculty of TCNJ for setting me up for success.
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https://www.guinnessworldrecords.com/world-records/72387-stretchiest-skin